...bailey's story...


Our story is a story about a MIRACLE. It is not the kind of miracle that is so often shared in Christian circles. We have heard stories about untreatable cancer that disappeared and of a child that was never supposed to walk or talk and is now a healthy adult. These are often the kinds of stories people share with you when you are experiencing difficult circumstances. Stories about the TRAGEDY that was avoided or the near miss that is now in the rear view mirror of life. We value these types of stories and we CELEBRATE them!

Ours was not that kind of story. Our daughter Bailey Hope was born on February 20, 2009. She died on August 13, 2010. The eighteen months in between were horrible and heart wrenching as we experienced our worst fears coming true. We were not rescued FROM heartache and tragedy.

Our miracle was that we were joined IN this journey by friends and family that gave of themselves and by our GOD who held us in unexplainable ways. This is our story. We do not share it to garner pity. There are others who have similar stories. There are so many others who have more tragic stories.

We share our story because it is impossible to talk about our beautiful daughter, without talking about our beautiful God. We must talk about our daughter. We must talk about our God. It is the MIRACLE behind the MIRACLE.





Friday 1 May 2009

Feeding

Bailey had her swallow study and she does continue to aspirate. In a normal swallow as food reaches the back of the throat the airway is closed off to prevent liquids or food from entering the airway. When Bailey attempts to feed she does not adequately close off her airway to protect against ingested food. She is also a silent aspirator. We have all experienced things going "down the wrong pipe" and know that a coughing fit follows. As a silent aspirator Bailey does not have this protective cough response. Instead if she were fed orally at this time she would be at high risk for respiratory complications secondary to this aspiration such as pneumonia. One of the things that can be done to prevent this is thickening liquids so that they are less likely to "go down the wrong tube." Other strategies including how she is positioned during feeding can also help. She has been referred to feeding therapy and will start in the next couple of weeks. For now she will continue to need to be fed through the G-tube.

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